When I was told that I had cancer, I wondered if I might turn it into a moment. When you watch programs like American Idol, you hear of the hardship people went through, which motivated them to enter the competition.
One such ‘moment’ was that with my promotion of Relay For Life, I told my story about catching PROSTATE CANCER early, which motivated more than 20 men got themselves tested, which is awesome.
I started writing songs about my journey and decided to create an EP called THE CANCER Diaries and combine that with a music video, which would tell my stories of tough times and of hope. The final song, which is half-finished will culminate in a song called Dare to Dream, which needs the backing of a gospel choir for the emotionally inspiring (I hope) finale.
The intention was, and is, to donate the finished product to the cancer society. I am hopeful that it will help other people on their journeys with cancer or in support of people with cancer, as it did me in writing and playing the songs.
Anway, life got in the way.
Since COVID19, the good people at Boosted have set up a program for artists, especially musicians and songwriters to raise funds and koha because they are unable to perform live during the lockdown period. I told them about my idea and they said that it sounded like a great project for a Boosted campaign.
So I have set one up, which you can find here. I will be performing live on Sunday evening at 5 PM right there on that page. Hopefully, it will go well. It took me most of yesterday to get my sound gear working for streaming. It’s probably been a year since I was last on Twitch or YouTube live.
So the plan is to finish the songs, record them in a studio together with a few volunteer musos and create The Cancer Diaries EP and video. I’m also hoping for support from other people who can help with video and especially with a gospel choir. Do you have one hanging around somewhere?
I also need your help to spread the word about the campaign which runs for 30 days from today, in any way or form that you can.
As you may have seen from earlier posts, I had a back accident 15 months ago and after 4 visits to hospital, the most recent being of 7 days duration, I am still no nearer to getting the surgery my orthopedic spine specialist / surgeon recommended for me and requested ACC to fund.
What went wrong?
I’m going to tell you about 2 critical things. The first is about how I injured myself, by which I mean the primary cause and the second is about who I got referred to.
The Primary Cause
My latest accident didn’t seem like much. I was at my 6th Relay For Life in March last year and ready to walk a marathon distance (my goal, which I achieved) over 18 hours.
Setting up prior to the event and prior to heading for the survivors’ tent (I am in remission from prostate cancer), we had a 4 room tent to set up, and the poles and pegs were in a big bag in the trailer that was provided by the organisers to get our gear from the car park to our team site.
It was super heavy. No one seemed to want to get it out, including the guy driving the tractor. So I tried. Unfortunately, my back couldn’t take it and I ended up with a back strain injury that still has me off work today, 15 months later.
I managed to do the distance through the use of medications like Panadeine and I had booked a couple of days annual leave after the event to recover, based on previous years experience. I also had a float and massage the following day, so I didn’t feel too bad after that. A bit sore, but otherwise OK.
A few weeks later, on ANZAC Day, in fact; I remember because it occured on the weekend before the public holiday (a Wednesday) and my wife and I had taken the Thursday and Friday off to go away in the Corvette for a few days holiday.
It had been raining, and on the Sunday before our planned holiday, I mowed the lawn and using the catcher to collect the heavy wet grass. I had to twist on an awkward angle to detach the catcher from the mower, twisted my back again, and the rest as they say was history.
You can read previous blogs but the key point was that whilst an MRI showed damage, ACC weren’t satisfied with the injury having been caused by the incident, they said it was age based degenerative disc disease. They said they would try to see if a previous injury could be relevant that they could tie it to which would convince them to cover the cost of the surgery and herein lies the problem.
A Skydiving Accident
Many years ago I had a skydiving accident. It was a tandem jump and if you have ever experienced one, you know that the customer is at the bottom and the Jumpmaster is on top. When she tried to flare at about 30 feet we got into an air pocket and instead of opening up, the parachute closed down. Instead of gliding to a running stop, we dropped and I took her weight on top of my own, on my tailbone.
It hurt like mad, but I was also flying high on adrenaline from the jump, so I didn’t really feel the pain that much. That night it was very sore, but we went to a big neighbourhood party and I found that bourbon acted as a great pain killer, so I managed pretty well and enjoyed the festivities as long as I didn’t make any sudden moves.
That night there was a bit of a storm and one of our trees was blown over.
The following morning, I was trying to clear branches in our yard, bent down and found I couldn’t straighten up again.
I went to physio who asked what happened and I told my story, the ACC record said “bent down and hurt back while picking up branches in garden”. I had 26 physio visits, was referred to Pilates and was assigned a personal trainer.
I did talk to them all about the sky diving, but it never made it to the ACC records. It therefore registered as a strain.
I was racing my land yacht in a 180 km enduro on 90 mile beach. I crashed at the northern end of the beach, picked myself up and raced back again and had to endure racing through snapper holes around Ahipara Beach, which is like racing on sheets of corrugated iron. Lots of pain, but again lots of adrenaline. For much of the race, I was going at speeds of up to 100 kph on a thin cushion as you can see on the video above, and with my feet sitting on a steering rod so all of my weight was on the lumbar area of my back.
At the end of the weekend it was a 5 hour drive back home to Auckland and a couple of days later, guess what? I was in the garden again, bending over and suffered intense back pain.
Guess what went on my ACC record?
Lots of physio for an injury sustained doing gardening.
So, when the specialist looking for reasons to not approve surgery (me having had every other treatment they could think of, for over seven months), they looked at what I had been referred for (back strain), looked at old injuries sustained in the garden, so probably not significant, all because I didn’t understand the importance of mentioning the crash or the sky diving on the initial ACC form. After all I was getting treatment. That was all I was concerned with at the time.
I might have got a very different response to my request for surgery if the primary causes of injuries had been clearly recorded, instead of lost to obscurity. Now I am chasing a Review of ACC’s decision not to fund the surgery which is going to be time consuming and expensive.
So if you are injured and covered by ACC, make sure that, irrespective of which straw broke the patient’s back, that the primary cause of injury is documented, even if you are happy that the treatment will fix the problem.
I’m now in a situation after many back injuries, that ACC are claiming age based disc degeneration disease and I am going to have to prove that I did in fact sustain some major injuries and that it was the cumulative impact of those injuries that has me now needing expensive surgery.
If I had made sure they had all the information correctly recorded, it would probably have been plain sailing for me now, instead of 15 months off work, the possibility of losing my job, and a long, expensive and stressful battle to get my back repaired so I can get back to work.
2. If Referred to a Specialist, Make Sure it is one who Operates in Your Local Public Hospital.
I was referred to a very good surgeon by my GP, largely because he is one of the category of trying everything else before getting the scalpel out and doing major surgery, which in my case will involve 2 surgeons for 4-5 hours and a 5-day stay in hospital.
Because of all the drama with ACC (New Zealand’s Accident Compensation Commission), in April I asked my GP (at the recommendation of my surgeon) to refer me to the public hospital. Whilst I have other medical insurance, it only pays (up to) 80% of the costs, which means I would personally be up for around $18,000 that I have to find myself. It could even be more because they won’t know exactly what they have to do until they cut me open.
So I was referred as ‘URGENT’ to North Shore Hospital on the 4th of April this year. I told them I was not working and that I could come at short notice and asked if they would put me on the cancellation list and they said “Yes, we have a cancellation list, is there anything else?”
I rang a few times, mostly talked to voicemail and the first time I spoke to someone they said “It’s only been a month!” To which I responded, “yes but I was referred as urgent.”
This month I had a flare up and spent 7 days in the Orthopedic Ward at North Shore Hospital. They did an MRI, hooked me up with a pain team and eventually once the pain was under control with drugs, they let me go home.
They told me that the stay would not be seen as my First Specialist Assessment (FSA) for which there is an expectation that you will be seen within 4 months of referral. They said that the Orthopedics Team knew about me and I would probably now be seen within 2 weeks. So they scripted 2 weeks of pain medication for me. They said I would get a confirmation letter from the hospital.
So I got out of hospital on the Sunday, waited until Wednesday and rang to find out when my appointment would be. I had to leave a message on their voicemail. I rang again on Friday and again left voicemail.
On Monday this week I got a phone call telling me that they did in fact have a date for me in late August. Today is the 17th of July.
So much for my 2 weeks of pain medication. I should have got the message when the doctor who checked me out of hospital laughed when I said I was expecting to be seen in 2 weeks.
If my GP had originally referred me to a specialist who also worked on the public health at North Shore Hospital, there is every likelihood that I would have been referred for surgery at the hospital in November last year, and could well have been back at work by the beginning of this year.
Now instead, I am still waiting for a First Assessment, and they will want to decide for themselves what treatment I should have. So while the logic behind my original referral was sound, the end result is that it set me back anything up to a year.
Hindsight is a wonderful thing, but the point I am making is that you, dear reader, may have a back injury like me, or perhaps a knee or shoulder injury from playing sport.
By learning from my experience, you might be able to have a better experience, receiving treatment within the same year of your injury and not jeopardising your employment and having double the stress.
Being in severe chronic pain for over a year is horrific. The potential consequences can be many including
losing your job,
becoming addicted to pain medications,
sleep deprivation with all that comes with that,
becoming stressed to the point of depression,
having no social life or family life,
which also results in relationship stress.
Here are two ways you can reduce the risk of experiencing what I’m going through.
If you injure yourself doing something major and then aggravate it with a lesser injury. Insist that the cause on the ACC form is the major impact and the secondary injury is clearly shown as secondary. It might not matter now, but in 10 or 20 years it could save you from the horrible 15 months I’ve endured so far.
If you need to be referred to a surgeon, even if you have medical insurance, get referred to one who operates from your local public hospital. You may not end up needing to go public, but at least you have viable options and it could save you many months in getting treated.
Hi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.
My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.
Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.
In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.
Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.
Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.
I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.
It’s been 14 months since my injury.
My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.
It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’
I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.
Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.
I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9th of April.
I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.
I have Prostate Cancer.
During the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.
I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.
I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.
On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!
Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.
I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.
I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.
It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.
As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.
Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.
I’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.
I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.
Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.
I guess ‘reasonably well’ is a relative expression. I’m not dying.
The email is quite personal, but that’s really the point. I am a person.
Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.
You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.
Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.
So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?
I listen to a lot of podcasts. I was listening to them while commuting to and from work. Then last year I suffered a back injury and I have been waiting at home, consuming pain medications and exercising for what seems like forever, for ACC to approve spinal fusion and a discectomy so that I can get back to work.
Around a week ago they notified me that they are not going to pay for the surgery on the basis that I have degeneration in my discs that was not caused by the injury. It ‘rendered them symptomatic’ and I am now waiting for an appointment with the Waitemata District Health Board, whilst working on a review claim with ACC, New Zealand’s Government Accident and Injury insurer, who I feel could have had me back at work 6 months ago. They are still covering me for the back strain, but my specialist has said that they have tried everything bar surgery. “We’ve painted ourselves into a corner” he said.
I’m told that the North Shore Hospital spine surgeon is fantastic, but they also told me they have to legally see me within 4 months. In other words, just because it says “urgent’ on your case file, doesn’t mean you will even get to speak to someone anytime soon.
So I’ve had a lot more time to listen to podcasts while exercising, strengthening my core, whilst awaiting the needed surgery I still need, so I can return to work. I suspect there are thousands of people like me, numbers that get recycled in meetings focused on saving money. Ironically, when I work I am saving citizens much more money, but I digress.
One of the podcasts I enjoy is from Azul Terronez called Born to Write. If you follow me, you know I am passionate about writing and storytelling as a means of sharing a message on my various blogs and books.
The latest podcast from Coach Azul really resonated with me. The guest was Cameron Harold, a writer, entrepreneur, business mentor and founder of the COO Alliance.
He talked about some struggles he had growing up when he was told that he was not academically in the top 40% of students and how he battled in his mind with that through school and university.
His story to becoming an entrepreneur resonated with me but from a different perspective, particularly the education part. It fascinates me how education systems seem to fail at both ends of the spectrum, contrasting with today’s apparent dumbing down of some generations whist the skill levels that create our greatest achievements are held back, limited to those who often achieve despite the system, rather than by its design.
I was one of those kids who didn’t fit in school, particularly once I got to high school. This was not because I wasn’t in the top 40%, but because I was in the top 2%. I’m starting to write about it, but not at this stage for publication.
I used my smarts to survive in a school (being a good guitarist helped) where the height of success was failing exams and getting into the school rugby 1st 15. In my school an A+ meant getting bullied for showing up the other kids. We had streaming, but being in the ‘Ac 1’ class also put a target on the back of your head.
Even teachers who tried to encourage kids to do well were on occasion beaten up and thrown down stairwells because the kids they tried to help were embarrassed in front of their peers. I liked sport (I played in previous schools, hockey and club soccer when living in Holland) but the thought of having to stay at school a minute longer than I had to (for training) was anathema.
The podcast I listened to this morning was about getting FREE publicity. I learned similar lessons to Cameron Harold early in my career, when I was racing landyachts as a hobby sport, and I was looking for sponsorship to send a team from New Zealand to the USA.
Me on my Class 5 Winger on 90 Mile Beach
I needed publicity to attract sponsors for a sport where one minute you see the yachts racing over the sand on a long beach or on the tarmac of an air base; and for the next half an hour or so, you sit there waiting to see them briefly again as they would fly around a mark, crashing into each other on 2 wheels. It was a great spectator sport for about 4 minutes of each race that could take up to an hour and a half.
I did two things. I got a well worn small book from the library. I don’t recall what it was called but it may as well have been called “Get the coverage you want by giving the media what they want”.
One of the things it said to do was to ask them what they wanted. That seemed to simple but I did it. I rang radio sports journalists, I rang TV, I rang magazine editors and I rang newspaper sports writers. I introduced myself and gave a quick pitch of why I was ringing, explaining the challenges of a fast exhilarating sport, with yachts on wheels doing over 100 kph on the beach that no one had heard of.
Next thing I found myself in the newsroom of the New Zealand national daily, speaking with the Sports Editor. End result, they got some great stories, we got global TV coverage, we got international magazines and radio stories, we got sponsors and our team (unfortunately I had to pull out at the last minute) went to the Nevada Desert and won the America’s Cup of Land Yachting! And I learned how to get more than my fair share of media coverage for my employers and my modest entrepreneurial ventures.
Ironically listening to Cameron’s story, and despite being very gifted intellectually, I didn’t do any university study until much later in life, because I spent many of those teenage years rebelling against a system that had no place for bright people. I’ve had a pretty exciting life so far and I feel I have made a strong contribution in my endeavours, but I also wonder if I didn’t live in the land of Tall Poppy Syndrome, how much more I could have achieved if the education system had acted on what they discovered about me and nurtured it.
Which sort of brings me back full circle to my ailing back. I have now sat down too long writing this and need to do some stretches and exercise as I wait for my number to be called by the Waitemata District Health Board for my first specialist meeting, so I can have my surgery and get back to my job. When you’re a number in the system, a few pages in a manilla folder, you are equally invisible if you want to work and be productive as someone who will quite happily live on a benefit.
This was my second ever float and I want to warn you that unless you really want to know more about the floating experience, my personal one, click on one of the word cloud buttons in my blog and find something that is more relevant to your interests.
When I first started floating back in 1987 it was something quite new. I was sales and marketing manager for a company that was very successful, but being embezzled by its CEO which was apparently a recidist pattern for him, but one I didn’t find out about until after it had cost me and some of my colleagues a lot of money and stress. I won’t mention the company, some of you will know the story. It’s really just to say that I was working really hard, bringing in some amazing 6 figure sales, and stressed, partly because at the time I knew something wasn’t koshur but I didn’t know what. I do wish some of the people who knew the past history of this criminal had warned me, because I would never have accepted the job and would probably have followed the career path opportunity to Santa Clara that stood before me.
So I go from there to the following experience, which is pretty long and unexpurgated. It’s basically my journal and pretty geeky. So here goes:
“I don’t know at this stage if there is any relevance or not, but shortly after my first float I felt a sensation in the region of the right-front part of my brain. I have felt it several times since, almost as if another sense is trying to find its way out. It has no other manifestation other than a slightly happy feeling accompanying it, which may be psychosomatic. It feels related to and yet isolated from the optical nerves.
Today, (Sunday) I had my second float, one and a half weeks after my first. I did not feel as stressed, although I did feel a need for an aid to relax. I was also keen to follow through on the principles of floating which I had started reading about. There was a force driving me to write down my experiences. A sense that something good was going to eventuate from this, far more than just relaxation.
The last week has been very tiring. Thursday was marred by arguments with the CEO and other stress-inducing problems. In the afternoon I left Auckland and drove to Palmerston North (About 350 miles). The Sales Engineer and I finished setting up a demo at the hotel we were staying in at 11:30PM.
The demonstration did not finish until after 4PM the following day, which was followed by further arguments with the CEO. It basically came down to, I was bringing in cheques from clients for 6 figure sums of money. They were being deposited somewhere and I was being told the clients hadn’t paid and to chase them for the money I had already handed in. I had never experienced a con artist like this and this being one of my greatest values, I really didn’t know how to handle it.
By 8:30PM, I was exhausted, driving back home I was starting to drift to the wrong side of the road. I decided to stay overnight in Taupo. I can’t remember the last time I felt so exhausted and overemotional. I write this because it relates to my mental state when I had my second float.
So back to the float. I was much more relaxed physically and settled in very quickly.
I did not experience the same heaviness in my neck and shoulder muscles, which suggests that much of the physical effect from the first float was a release of long term muscular tension”
Note, I am pretty much copying what I wrote verbatim at the time. It’s raw and was only really written as a personal journal. It’s quite interesting reading this 32 years later. I also want to note that I was not under the influence of any drugs of any kind.
“The muscles that felt tired and were unravelling this time were those I had just used for 1,200km of driving; arm and leg muscles.
-Mental / physical disorientation. The first example was a feeling as if I had my legs crossed at the ankles. Although they weren’t crossed (I checked), my senses were convinced that they were.
An ex-client once lost a hand in a chainsaw accident. For months afterward he felt pain in the fingers of a hand that no longer existed. (AKA Phantom Limbs)
I had a similar manifestation on several occasions that I was clenching my fists. Again I knew that my hands were open and relaxed (in the yoga nidra position, palms up). It was not just a feeling that my fists were clenched, my sense of touch had no doubt at all. However, I raised my hands, they were as I knew, open and relaxed.
I passed into and through the REM state much more quickly than in the first occasion. I find the REM state enjoyable and relaxing even if my eyes seem to be going to town.
I finally reached a point where my mind and senses were totally blank. This must be very similar to the point people seek with meditation. It was a sense of being nothing, or an infinitesimal body in a black void and being totally relaxed and comfortable with it.
I believe that this period lasted for only a fraction of a second, although it appeared to be a long time. As soon as I realised I was in this state, I snapped back to reality.
I have noticed a tendency, which makes me feel a little cautious, possibly stopping me from achieving total relaxation, in that my respiration rate is reduced to a mere fraction of normal, and there are in fact periods where I do not breathe at all, at least in comparison to my normal conscious state. The breaths are so far apart that when they come, they distract me.
I also noticed that after the first float, for 1 or 2 days, my time sense seemed altered. For example the time period between light changes at traffic signals seemed much longer, although intellectually I knew this was not so. (Weed smokers will probably relate to this, but I promise, I was totally straight).
Other than that there is little to remark upon. The second float was understandably a little anticlimactic and the endorphin level much lower than it was previously. I was advised by the manager to expect changes over the next few days.
Meanwhile, my driving muscles are feeling sore and I do not feel the same sense of euphoric confidence as I did the first time.”
I think like most experiences, the first is often the most moving. Reading back through this, it is probably very boring, but being a geek, I was trying to analyse the experience, as well as enjoy it. There were in fact physiological and psychological ongoing benefits from this which I will write about in my next blog.
As I have said previously, these blogs are personal and I share them in case they are of interest to someone and to remind me of previous times. If you haven’t floated before, or you want to get more out of your experience, I also recommend keeping a journal.
If it sparks your interest, go and visit Float Culture and tell them that my blog vaught your interest and Luigi sent you. If you are not in Auckland, just Google float tank and I’m sure you will find one reasonably close by. Anton, the owner of Float Culture told me that there are now 19 places in New Zealand where you can ‘float’. I’m sure that is a record and shows that there is real benefit from this experience.
What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.
So the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.
That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.
First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.
If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?
My Big Project A Cancer Video EP, the Last Song
As you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.
The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.
The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”
So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!
Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)
Dear to dream
Watch me lift my hands up high
Dear to dream
Reaching out to touch the sky
Dare to dream
Take off like a bird and fly
Can’t believe this feeling
Repeats after break with lead guitar and horn section
So there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.
So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.
Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.
Want more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.
If you have been following my recent posts you will know that I have decided to set up 150 values based activities or experiences to achieve in the next 5 years, having been told that I am now in remission from cancer.
I have always been fascinated by lava. Living in New Zealand, I have been to White Island and experienced sulphur plumes, seen active crater lakes and live a few kilometers from Rangitoto Island, a dormant volcano in Auckland. I’ve seen bubbling mud and enjoyed geothermal hot pools, but I have never seen actual lava pouring down a volcano.
So Life List #5 is to go to Hawaii and experience this from a helicopter or whatever safe way we can get to see the fire coming out of the belly of the earth. of course while there, we can also get to experience another part of island life, Pearl Harbor and other aspects of the islands.
The entrance to the radiation therapy room at Mercy Hospital, the start of my days for 8 weeks
Do you know anyone with cancer, depression or other debilitating conditions? Do you suffer yourself? Perhaps, like me you have a health condition yourself; and like me want to create something positive out of it, including coping strategies and fighting to find yourself back.
Would you like to be part of something that resonates with your values and help support me on this HAG (Hairy Audacious Goal)?
With the help of some good friends and family, some also still suffering from cancer I dragged myself out of feeling sorry for myself and decided that number #2 on my 150 long Life List of values based activities would be to created an EP and Video set of songs that were part of my catharsys and development, such that it will resonate with and help other cancer sufferers and their friends, family and support network.
I’m wondering if I have created a monster. How will I achieve this and 149 other things to boot, let alone find the energy for it, without detracting from my day job, which I can’t financially do without (and am passionate about)? How will I achieve this when I still frequently have to be woken up in the evening after my day at the office?
The answer, which is the same one as my cancer journey is that I can’t do it alone. In order to help other people, I need help from a team of people with a rich source of experience and some that can help with less specialist areas of support. Everything from project planners, musicians, vocalists, videographers to sound engineers, artists, production, social media, marketing and crowdfunding. Are you one of those?
I also just need supporters who can help spread the word, connect with members of the team, make cups of tea (or Texas Honey), run around after us and keep us on track and provide emotional support. We’ll need studio’s, technology, sound gear, meeting space, This is a pay it back or pay it forward exercise and should be a lot of fun.
Just since yesterday, I have already had firm offers of help from people, which is awesome and I will take them up on it. I’m going to need a pretty big team with a wide range of skills and it’s a labour of love, a not for profit venture.
Check out this short video with Danny Dover and see if it resonates with you. Is your life meaningful? For some of us it takes a reminder of our mortality and human condition to force change. Then you have to do something about it. You might like to take a similar journey and if you do, some elements may overlap. I’d love it to be this one.
So, this morning I started documenting what I am going to have to do in order to achieve this goal and it is huge. It could almost be a full time job in itself, which is intimidating, but if I can find plenty of experts in different fields who will support me and donate time and energy; and find funds for the parts that I have to pay for, I’m going to make this happen. I’ve done it before with The Wireless Forum, Glenfield Music Centre, parents committees, sport club committees, Auckland ICT, SMEI International and more, all while keeping down a job. Anyway:
This is what I came up with for starters and it’s by no means complete:
Plan for Cancer Music EP / Video Project
Concept Document and elevator pitch
What help do I need at each phase of the project
How can I even do it while keeping my job and energy?
People or organisations that can help me
People who have raised their hands
People I would like to approach for help
How much do I need?
Where do I get it from?
Write a story about each one
What do I need for each song
Record basic demos
Identify the sounds I want for each song
What instruments / vocals do I want for them
Find a producer
Find a studio
Record in conjunction with videos
Video the entire process, not just the songs
What is the story for the whole production
What is the story for each song
Find a videographer
Write each song story
Find an editor
Launch event and concert gifting the outcome to the Cancer Society
I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.
Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.
Where we leave our clothes when we go in for radiation treatment
I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.
So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.
It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.
Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.
One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.
So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.
I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.
I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.
Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.
Item 1 is something I have wanted for years and even considered developing myself. It is a GPS based solution that will allow me to track all the places I have walked and motivate me to constantly find places I haven’t walked before by logging them on a map, preferably automatically from my iPhone.
I used to do ocean kayaking and used a paper map book. Every time I went out, I did a new stretch of coastline and marked it with a highlighter. Easy to do for sea and tidal estuaries, but not for roads.
So the List Item is ‘Track everywhere I walk and aim to walk somewhere at least 4 days a week over the next 10 years’ That works out to 2,082 walks. I entered it into my iPad app called Make It Happen 2012, which doesn’t seem to exist anywhere or I would send you a link. It looks like this:
I woke up yesterday thinking maybe I should start a crowdfund and get something built and then spent an hour or so searching for apps and eventually found Move which I installed on my iPhone. It tracks all sorts of things including walking, cycling and driving automatically. So that motivated me to do walk number one which was to the local grocer and back with my wife. We did just over 6,000 steps. The app showed where we had walked, not super accurately, but good enough.
I then had to find a way to upload it onto a website so that I could see where I have been and plan new walks, because the app only show each individual link. I found MOVE-O-SCOPE which is now owned by Facebook and connected the two. I thought I had finally found my solution, but now I’m not sure.
I connected them as per the instructions and found loads of driving data from 3-4 years ago and also walking data from 2013 and 2014 but not the walk I did yesterday, so I’m hoping this does actually work, or I will be very disappointed. There is a huge market of people that want this functionality and it seems like it is all here. Maybe it needs a week of data before it shows anything, but even the slide only goes to 2014.
So I have the app on my mobile, but it’s no use to me without the visualisation because I can’t see on it where I have and haven’t been since 2014. Hopefully this will get sorted because that was still the key.
Meanwhile I do have my first values based item on my Life List, which is to exercise and look after my body, whilst also enjoying being outside and part of my surroundings. I’ve sent them a PM on Facebook and hopefully they can sort me out because there doesn’t appear to be anything on their website.
If anyone reading this can help or point me to any other service that does what I need, I’m keen to hear from you.